PANDAS but neg titer?

[gremlin44]

I'm new here and am trying to figure something out.

 

I, my pediatrician, and a pediatric neurologist all believe my recently turned 4 yr old son (9-11) has PANDAS. However his rapid swab test and blood work came back negative.

 

We know there was strep in his preschool class back in May. On September 6th (2nd day of preschool this year) we got a note saying that someone was sick with strep. On September 10th he was hot, tired, complained of a sore throat in the morning, stuffy headed. On September 11th he seemed mostly recovered. We figured he was just crashing after his birthday party on the 9th.

 

On September 25th Kevin started counting in sets of 3s "1, 2, 3." As the day progressed he might repeat a word 3x ("Mom, I like Fergus. Fergus 1, Fergus 2, Fergus 3." or "Thomas, Thomas, Thomas"). He had never done this before, and it lasted all day. The next day the counting was still there, getting stronger. He had a period of time that night where he insisted he had to pee every 2 minutes for nearly an hour. The next day (Sept 27th), more counting and I noticed odd facial twitches as he was going to sleep at naptime. 28th--counting, severe facial tics at bedtime, more of the repetitive peeing. 29th--counting, sudden obsession with handwashing, chewing on his shirt.

 

On the 29th I took him to the ped after having spent the last two days reading articles about PANDAS. He seemed to match the symptoms, especially when one article mentioned boys presenting with sudden daytime urinary urgency. My father had OCD, so he has the genetic background. The pediatrician has had a few other patients in her practice with PANDAS and she seemed to think he has it. The rapid throat culture came back negative. I asked her to do the blook draw. On Oct 2nd those results came back--negative.

 

On the 2nd we saw a pediatric neurologist. She examined him and said that he seemed fine neurologically. She did not notice any choreiform movements or tics, though I observed several while I was there. She said she believed he had PANDAS and she had several patients with it. She said none of her patients ever came up positive on a strep titer by the time they got testedm, so she was not concerned with that.

 

I had asked for a copy of the blood work results. Just the other day I was looking at it and noticed that only one of the 2 strep tests was performed. His ASO was 7--but she didn't test the DNAse-B.

 

Should I go back to for another blood draw to check the DNAse-B? Did we just fall into an in between time for testing? I feel with all my heart that he has PANDAS--the onset was so sudden, the symptoms are classic. I try to read about the two different titers so that I can understand them better, but I'm so tired and stressed out from dealing with the OCD (the fights over whether his underwear are clean or not, constantly having to clkean up after his handwashing, etc) that is isn't making sense to me.

 

The only reason I'm concerned is because we finally found a therapist who works with young kids with OCD doing CBT/ERP. When I mentioned PANDAS to him he asked about the blood work--and made noises when i said it was negative. This was before I realized that we dind't have any DNAse-B results.

 

Kevin was on a 10 course of amoxycilin. It ended on the 8th and during that weekend his counting and handwashing were nearly gone, but he was having these bouts of 30 minute period of just manic frenzied behavior. On the 13th he started sneezing, was congested, complained of sore throat, and became feverish at bedtime while he was being babysat (99.3). We started him back on amoxycilin on the 14th on his ped's advice.

 

Does this sound like PANDAS? How can we find the strep?

 

Forgot to mention--he had strep twice when he was 2 1/2. He rarely gets sick, and when he does, he doesn't appear very sick at all. Whenever we do take him to the doctor it turns out he is more sick than the doctor or I expected...like walking pneumonia.

[Chemar]

Hi

 

in order to fully rule out PANDAS the complete testing should be done

 

from the NIMH:

 

Be sure to include a throat culture of group A B-hemolytic strep. Ask that the specimen be cultured, not just the rapid test.

MOST IMPORTANTLY do a blood test to assess elevated streptococcal antibodies (Anti-DNAse B and Antistreptolysin titers (ASO)).

 

by not doing the Anti-DNAse B, they havent tested properly

 

from all you describe, it sure sounds like PANDAS to me

 

also ask your doc re PITANDS

 

BTW, we have a number of posters on the TS/tics board who have had great success using AZITHROMYCIN (Zithromax)prophylactically as a means of controlling PANDAS induced tics/OCD

[gremlin44]

How long after the end of the first round of antibiotics should you see the symptoms "end" (I know from what I've read that some kids have small symptoms that persist and are worked on with CBT)? Some things I read said initial episodes last 30-45 days, but I couldn't tell if that meant from the time of the first OCD behaviors or if that started from the day the antibiotics ended or what.

 

His doctors and I would prefer not to have him on a prophylactic dose of penicillin due to his age and weight (barely 34 lbs). We have an appointment with a child therapist who does ERP on Thursday.

 

I feel so overwhelmed and confused at this point. I don't know if I should drag him back to the doctor for another blood test for the DNAse-B--he was pretty upset by the first blood draw. Yes, it might give me an answer. But do I need the certainty of that when no one is disputing that he has PANDAS? Would I be doing it just to satisify myself considering that his treatment plan is for PANDAS? Is it safe for me to just wait and see what happens--which would theoretically show us one way or the other if it is PANDAS or just a bizarrely rapid onset of OCD in an abnormally young child?

 

Current plan is daily probiotics and flax seed oil in his homemade yogurt smoothies. Chewable elderberry tablets to boost immune system plus chewable vitamin. Right now twice weekly chiropractor visits for him, will go to weekly after a month to boost immune system. Starting therapy on Thursday. His teachers at preschool know, and a letter has been sent out to the parents of his classmates asking them to notify the school/us if their child has strep or an upper respiratory illness.

 

I just feel like I don't even know where to start, and yet everyone around me seems to think I should already be an expert on the topic.

[Chemar]

Hi

if you are certain this is PANDAS then yes, I agree, why subject your child to more trauma with bloodwork

 

and yes, CBT is an excellent treatment to pursue

 

I still would highly recommend that you look into prophylactic use of AZITHROMYCIN (aka zithromax)

 

the parents whose children have recently been given it are reporting remarkable results and it's prophylactic use is at levels that are nowhere near as drastic as with some of the other antibiotics

If you do some searches under PANDAS on the TS/tics board, there is a wealth of info there

also our expert moms there will be glad to answer your questions

 

http://www.latitudes.org/forums/index.php?showforum=1

 

The other treatments you are doing are very good!